Fibromyalgia - does anyone know of any good doctors from MN?

... I live in a very small town with small minded doctors, who don't believe in fibro. My records for the last year all say the same thing, I want help with headaches, my current medication quit working, I have severe back pain upper and lower. He continues to do nothing about it. He had the nerve to tell me once he didn't want me to end up like my mother. She also suffers from this disease, and takes medication. What a thing to say. Oh he also says I needs to lose weight. Which OK maybe I do, but I wasn't heavy until I was put on Lyrica. Now I am about 30-40lbs overweight I guess. I have been requesting a MRI, and NO, he won't give me one. I am concerned because I am shrinking. I used to be 5'7 almost 5'8 now I am barely 5'5. and that's over just 5 years. Any help would be greatly appreciated. I don't want to just start going from doctor to doctor and seem like I am doctor shopping.

Responses (7)

Hello I also suffer from Fibromyalgia and currently taking Lyrica 150mg twice daily. I've also gained 30 pounds asp far. Do you have any ruptured disc in your neck or back that you might know of. The only way to tell is a MRI which I believe you need. I have 6 ruptured disc myself and if I were you I would go to another dr even if it means driving a hour to get there. You definitely need answers!

If you are losing height, it could be that you have osteoporosis. It is very common to lose height as you back will get compriesion fractures & believe me they make you less tall. As far as the Lyrica, I also gained about 25 pounds on it, but founad out is was al water weight attributed to high blood pressure from taking Lrica. The day my doctor made me stop the lyrica, & pur t me on Furosemide I lost 6 ponds in 2 days of nothing but water weight, & within a month the entire 25 pounds was gone without dieting at all. Lyrica is known for this problem. It sounds like you need to see a rheumatolgist not a GP for your fibromyalgia & possible osteoporosis. Even if you ad to drive or have someone drive you to a city, it would be worth your while.. A DEXA scan can & would tell you the density of your bones, & if your doctor can't do one, most hospitals have the equipment to do one. It is very important if you have this disease of the bones, that it start being treated as soon as possible because it only gets worse... Mary

Hi joeiy & welcome to the site. Being on Lyrica they must believe you have fibromyalgia otherwise they would not have prescribed it as it is a seizure med that is used off label for firbomyalgia pain. too used to take it & gained 25 lbs from it. I also got a bad case of high blood pressure from it, & found that the weight gain was from water retention & not actually fat in the tissues. Others have complained about this drug too causing weight gain. It does help some with the pain of fibro, but others don't like it at all. If you have lost that much in height, it almost sounds like you could have pretty severe osteoporosis. The only way to tell this is to have a DEXA scan of you hip & ankle bone area. It's just an xray type of test that measures your bone density in those area. Almost any hospital has the correct Scan to do this My doctor has one in his office. Compression fractures of the spine can cause the loss of height.

It sounds to me like maybe you & your doctor are not communicating to well. I would suggrest you see a rheumatologist who are doctors who specialize in treating fibromyalgia patients. Even if you have to drive or be driven a bit to a larger city, this sounds like your best bet to get properly diagnosed & treated. I might also mention that teaching hospitls are great place to go usually found at Universities. I wish you the best, & please let us know how you are getting on... Mary

Sorry about the double post. I saw the typos in the first & tried to edit it, but apparently was too late & it posted too! Sorry again... Mary

Anonymous 18 Jun 2012

Is the Mayo Clinic in MN? I would go there if I were you, if your insurance will cover it and you can convince your current doctor to send you there.That sounds doubtful though. Your current doc sounds like a bit of a dinosaur. He's living in pre-historic times, no such thing as fibro? Good luck to you,OndiP.S. Fibromyalgia sucks!

thank you everyone for your comments. I am going to try and make an appointment again with the rhuemetologist that originally diagnosed me with fibromyalgia in 2004. He is at Essentia health. Hopefully he can help me. I was in a very serious head on car accident in 2006 it was a double impact, I was hit head on doing 45mph then I swerved from that and hit the ditch doing about 30mph. I developed degenerative disc disease after that, and I have been asking for a mri since but I haven't gotten one. When my low back starts to hurt I can push on the either sides of my spine and it grinds,is squishy and moves around, I have told him this too. Also I has a spot around the middle of my spine that bulges out. I am going to try and make that call, now, thanks everyone!

Wow that sucks, I have been on the phone and have just found out that my old rheumatalogist doesn't deal with fibro anymore, they diagnose and send you to your pcp for meds. NICE! and I tried other's in the Duluth area they are the same thing, or just injections. I don't want injections. Besides I am allergic to hydrocortizone. So I called Midwest Spine Institute, i'm waiting for their call. they are a pain mang. clinic. we will see.

Anonymous 18 Jun 2012

Sounds like a plan. Hope you get that MRI & something for your pain. Let us know how you come out... Mary

Hey Joey, I can't help you with the Dr thing I'm in another state. But lyrics does make you gain weight. I was on it for a very short period of time & I gained it quick. It is ad others say water weight. Get off it and took loss it pretty quick. As for your Dr not believeing in fibro neither did mine. I go to a othro Dr every 3 month's. I do have sever. Arthritis but he never says fibromyalgia either I was diagnosed by. Another Dr in 09 with it. I have neuropathy so to me that's the worst pain any other to me is secondary. I have back pain, bulging discs in my neck, its always something. I myself didn't believe in fibro either but it is a fast growing illness. It is painful. I found exercise, minimal for me helps, walking, elliptical. Don't get me wrong, I'm on pain meds for my Nero. I couldn't function without them . I have tried.but your shrinking, that happened to my mother, it was her arthritis, ostioperosis.

Have you ever been checked for that? It is very painful. I would have a bone density test done and go to a specialist not your Pcp. I no my specialist takes care if me I don't even have to go in I can just call now. I'd also been goin for yrs. I am in therapy now just for motion because I'm having knee and elbow pain. He gave me valuim to loosen up my body. It seems to help. Plus as I said you might want to the try exercise. No one said run a mile tomorrow, I'm allowed 10 mins a day. You'd be surprised what that can do for you. Sometimes I feel like I can't but wheni get started I feel better. Just some advise that might or might not be worth trying.And I would drive as far as needed to get to the Dr that would help me. Just do it. And who cares what ppl think if your going from one Dr to the next. Until you find one that helps go. As long as you aren't accepting meds from them all go. And don't stay with one if the other helps. II just think you need a specialist. But I'm not a Dr.Good luck.

Hi oxypana, I hate to interupt this thread, but is there anything besides exercise that helps your neuropathy? I have fibro and neuropathy as well, and the neuropathy is far and away the worse pain. Is there any position, lying down, or sitting in a certain manner that helps you? I also have a few discs in my neck that are degenerating, and lying down somehow makes the pain better for me, I believe it takes stress off of the pinched nerves, or so says my doc. I've had coritzone shots in my neck, but to no avail, they caused minimal pain relief for only for a few days. And any steroid stays in ones body for a longggggggggggg time, and can cause problems, made me a crabby female dog!! If you have any suggestions re neuopathy, I'm all ears! Thank you,Ondi

Anonymous 19 Jun 2012

Hi Joey, I apologize for hijacking your question!! I can't believe you were NOT given an MRI, that is irresponsible at best, and negligent on the doctor's part. Those doc's should be held accountable for that omission. Mary is right too, you need to get an MRI and fast. If things are bulging out of your spine, get to a good hospital, a University hospital. University hospitals can be expensive, but you are worth it, AND, if you hire an attorney, maybe you won't be responsible to pay for it, perhaps the doc's that didn't do the proper tests at the beginning can help pay for the whole schmegeggie!!If I were in your shoes I would contact an attorney over this. And I'm not a litigious sort of person. A lawyer may help you get on SSI disability, if you cannot work, and that doc needs to be dragged into court, to explain WHY he/she didn't do an MRI. Bloody idiot doctor!!

I do so hope you hire an attorney and get the answers and relief you need.Also, I agree with oxypana about exercise, it can work wonders, not only physically but it releases endorphins, the "feel good" chemicals in the brain, and you need some of those after what you've been through!Best of luck,Ondi

Hi Ondine, god you sound just like me. Literally. We have the same exact health problems. The shots unfortunately for me did not help, they made me worse. I couldn't use my left side for almost 3 months. Idk if they put the meddle in wrong, I felt it moving in my neck. Ugh..but I was also allergic. Had. Fever, throwing up for a week. At least it helps you. As for the pain in my neck the only thing that works is lying down. I use a pillow that conforms to ur neck or wherever you put it. I get migraines constantly. Finally the Dr gave me topiramate 50 mg, I was dupose to take 2X a day I can only take once. I don't no if you get the headaches but this medicine seems to alleviate the neck pain as well and its not a pain med, except for migraines. Upside you lose weight on it not gain. Try yoga. Nothing hard I got a Wii Nd use the exercise on that. On thing my Neuro Dr told me to do buy the Wii & board. It totally helps with the balance issues.

At 1st I was horrible, falling constantly, very unsteady had to hold on. After a couple weeks I was shocked at the improvement on my balance. Besides the Wii exercise, walking, elliptical, which is harder. I thought I would die after 5 mins my 1 st time on there. But you go up. And foods. Have you looked into what foods mae you worse? Yes their are foods their Neuro worse. I eat healthy. Apple's are good for us. Helps your energy level too. Also baths with sea salt. The salt is amazing. Not the kind you buy in your everyday store. It's pink rocks add it to a HOT bath. Lay in it you can literally feel it pulling something from the spits that hurt the worst. My legs are the worst for me. I'm not 100% sure the name of the site my brother bought me the salts I got. 50 lb bag. It last very long. I gave some to a friend with back injuries she was amazed. She said when she got out she felt so much better and for days after she even gave her mother some for her leg pain. It works. I Lao take sea aloe, its a liquid vitamin. You take a capful a day. Our b12 is very important to keep up, my des say my levels in Ll vitamins are great. She knew immediately I took some kind if supplement she couldn't figure out what with all my levels being great til I told her( my Neuro Dr) she said keep on it. And I don't no if they have this where you live drink vitamin water. I drink the vitamin zero. It's better for you. This will help those nasty nerve cramps we get. Also learned from my Dr. It's been 5 yrs I drink nothing but. Of course I switched brands until I they came out with the vitamin zero but I found it helps the best. Also I add in there G2 low calorie. When ur exercising we sweat more then normal ppl from pain. You loss a lot if vitamins. They are a key factor to our nerves regenerating so its upto you but you can try this stuff. It helps. The liquid vitamin you can get only online unless you live in ca I believe. It's www.naturesliquids.com. $40 a bottle. Last me about 2 months cause depending on your size you don't need a whole cap. I take half now. I used to take a while cap. It detoxes your body if nasty raducles and everything else so if ou decide to try that I'm warning you the 1 st maybe 3 days you will think you have a slight flu. You will be in the pot, so to speak constantly and you will smell toxins coming out of your skin. It won't make you sick that you can't fuction tho. It's worth it. And you will loss weight on it. I lost 20 lbs when I 1 st started it and my energy level went up so much I felt wonderful. All these things combined help. I have studied everything and anything I can find Nd have tried it all Ty hear are the thingI found that help me. I'll pass them on gladly too you if they help you wonderful. The pain is horrible. ,But I sleep now. I didn't sleep for. A Yr with pain just off and on. Anyone with this disese, I wonder what we did to deserve it. It's like cancer no cure, no known med to help us, trial & error. Just pain management for me. So I do what I need to do so I don't end up in a wheelchair. I get burst of energy for days then I crash hard. Yesterday I slept for 13hrs. But for 4 days I was non stop going doing thing. Sure I had pain and I had my I have to stop and rest times but not I can't do anything. Before all the exercise, vitamins baths etc..I was on the couch not able to move at all. I hope this helps. You ever have any questions feel free to message me. I am always getting new suggestions from my drs or coming across things during research I will try and pass in only if it works for me. A lot of it is nonsense. I hope they at least keep you comfortable with meds. Not lyrica, cymbalta. That's nonsense to me, phyc meds don't work. They didn't for me just made sick and crazy. The pain makes me a bitch as you said. Sorry this is so long but to tell you it all it had to be. I should've messaged you alone instead of invading this post. Well Odine let me no. nd don't over do exercise you'll cause yourself more pain then its worth. 5, 10 mins to start even after you think I can do more I feel good. I did that... big mistake!!Keep me posted Im always interested in fellow Neuro buddies plus I'd like to keep in touch see if it helps at all. I'll send you any new methods that come my way that work too.Have a great day.Lori

Anonymous 19 Jun 2012

WOW!! Thank you Lori, for all the info! I am doing most of what you have suggested already. I take loads of vits, exercise like you, yoga and walking, plus dance (alone, no audience, thankyouverymuch) which I love. I have avoided Vitamin Water because it's just too "trendy", hence uncool, but I'M NOT JUDGING YOU, just think it's a funky trend and afraid of OD'ing on vits!! One can get too much of a good thing! I just got interupted, so now have forgotten most of your suggestions! Fibro-Fog sucks. I can't take Topamax, and don't need to lose weight. Sooo, those things are out for me. Topamax made me feel so totally stoned, I thought I was at the Hash Bash @ school! And my vocabulary was frighteningly scarce from it, not a good side effect for me!!I eat very healthy, protein and vegggies, mostly veggies, just can't gag down meat anymore and can barely touch chicken of late.

I must wrap this up right now, will PQ you later tonight or tomorrow.Thank you again,Ondi P.S. I tried to comment after your post to me, but it ended up under your post to Joey, sorry about that Joey!! Lori, we need to share a PQ so we don't hijack Joey's question. Again, I thank you!!

Odine,hey i added you as a friend, i was goingot private message you but you have to add me 1st. so we stop hacking, joey, sorry joey!i have a few suggestions for you since you are already doing most of what i ddo.i don't do the meat thing wither.do you no our senses are higher woth sense of smell, taste..etc.. from this?when you said uck..i laughed. i feel the same.i can't wat meat makes me sick to smell it. chiucken lately to and i was just eating that and fish can't eat either. so weird

but yeah write me later. fill me in on what you do do besides hte littel you told me before you had ot go and what you can't do and i'll see what i haven't told you. i am really into what i can do do to better myslef and evenif you don't haveot lose weight it never hurts to drinkg or eat anything htat keeps it off with this illness we have cause a couple pounds can equal pain. i'de rather be thin then hurt. i knwo you understand that.but i gotta go too dinner time here and i don'[t knwo what to make but my hubby has to eat. oh and eat apples did i tell you that?ttylLori

thank you everyone for your comments they ar welcomed! I found the Spine instituite, so I am checking if my insurance will cover me to go there. They can help me with the spine issues, and they gave a name of a nuerologist and clinic to call for the fibro. I try to get out and walk a little everyday. The rain has been bad though, and that doesn't help with the pain. :( Also I have really high anxiety, so some days are hard for me to leave the house. I just feel like a walking medical case sometimes. I use topamax for headaches/migraines, and they don't work for me anymore. I have heard they help you lose weight. I don't get why I am not losing weight, I watch my diet, I eat really pretty healthy, I drink Silk milk, and alot of organic, and fruits and veggies. I just can't shake this weight though. maybe it's another of my medications. I will look into that.

hi Joeyhave you ever been given anything for the anxiety? I was very stressed out froma dr no lesds and my pcp reccomended i take Fluoxetine HCL 30 mg at 1st then i went down to 20 mg then stopped after 2 months. but it helped me tremedously. i was just very stressed amnd ready to give up and out of my mind with aneity from this dr screwing with my meds and i couldn't barely move at all for 3 months. within a month ai flet great then the 2nd motnh i was fine so i tapered myslef to one every other day and now am off of them and am fine. but i never needed them until all of that.you may need something longer but it seems yours is coming from your illness also.it can do that to us. the sickness just gets to us. depression amoung us is not uncommon so never bed ashamed of that.i feel bad for you and i am sorry me and Odine highjacked your post for aminute.but i hope that helps. i don't knwo if you were ever given it before or not.good luck joey i hope the clinic helps.Lori

Anonymous 20 Jun 2012

Hi joey,I wonder if most people with Fibromyalgia have anxiety issues. It seems like we all have anxiety or panic attacks. I agree with Lori, fluoxetine (or Prozac, the name brand) may help you.

Hey Joeiy, and welcome. I see that you were given some excellent ideas about the fibro, and what to do, but I do disagree with a few comments,and wanted to add my experiences. Everyone has said not to worry about the weight gain from Lyrica, it's just water weight, and you will lose it. True, that it is water weight. BUT, that doesn't necessarily mean that your body will drop the water weight as soon as you stop the meds. I was on Gabapentin (a very close relative of Lyrica) for almost a year, and gained 80 pounds!! All my doctors kept telling me to stop eating so much, and I believed them that I must have been eating to much. Not true. My doctor sent me to FIVE nutritionists, and each one of them said that I didn't eat ENOUGH!! I thought that was the truth, but the weight just kept coming on.

It ended up that a very rare side effect of gaba IS water retention, and when they took me off of it, guess what?? No more weight gain, BUT I have not been able to lose the extra water weight since, and this has been over FIVE YEARS. I recently found out from a doctor when I was hospitalized again with cellulitis in my leg that with that much water weight, your lymph system can't possibly drain that much fluid. Apparently your drainage system in your body is the size of a hair follicle, and when you hold that much fluid, you can imagine how all that is going to drain. SO, if the Lyrica doesn't help you, which it sounds as if it doesn't, GET OFF OF THE MED!! I now have to wear compression hose daily, which are the biggest pain, and by the end of the day my ankles are "cankles" as my son calls them!! I can't stand this!!! I have to take a water pill now everyday, and of course the side effects from a diuretic means that I have to take potassium daily, and the side effects from that means that I have to take extra magnesium daily, and I STILL am carrying all that fluid on me which is NOT healthy for my heart. BTW, I have recently lost 40 pounds, and I STILL am carrying around a TON of fluid. In fact, I just had to buy new compression hose, and they measured my ankles, and they are four cm wider than two years ago! That's how quickly the water weight drops on some people.

One more thing, if your height is going down, Mary is right, and you need to get a DEXA scan and ASAP!! That is not caused by DDD, but osteoporosis and compression fractures which could also be the reason you have so many back problems. I would certainly listen to what everyone said here to follow through with all suggestions!

I agree with you about the weight gain with lyrica. I was taking a nutrition class for my college and I had to do a daily food log for three days, I can in at like 800 calories a day. I am supposed to be eating 1500-2000 a day to maintain my weight. something is obviously wrong. I gained alot of weight and can't lose it either. I just stopped my celebrex, hoping it will help with the weight. I don't know what else to do. I have been off the lyrica for about 1.5 years now. I am just maintaining my weight. My doctor says I am overweight, and if I lose weight my back will be fine. Well I was down to 110 pounds, and up to 200lbs my back never changed. Weight can be an issue I am sure, but for it didn't matter. Thank you for the comments. I am trying to get a hold of my insurance company and see if they will let me go to a clinic I found. Thanks for the support everyone! :)

Joiey, I was also put on Lyrica for stenosis and neuropathy. And like all the Ladies who are responding, I started to gain a lot of weight. Because I am overweight already (not by a lot) and all the spinal, cervical and lumbar conditions I have to deal with I needed a way to address the situation. Again, like others, I was prescribed alternatives to Lyrica and they simply do not work. As Opana is for real pain suffering, so is Lyrica to those who have nerve damage. I tried going off of it and my nights turned in Dante's inferno... as the hours passed, the burning increased until by the end of a sleepless night I was in tears. Lyrica helped that.

My answer was simple but of course it's held other ramifications of having to take more meds. Topamax. My cp doc prescribed one Topamax (there are generics now so the cost is not a real problem) 100 mg along with my evening Lyricas (2 1oo mg in the evening) and the weight came off and stayed off plus it seemed to add to my general pain management.

Everyone is so different I do not know if this would be a solution for you and others, but I know it has worked really well for me. You can look into this site for info on Topamax of course. I have not done that yet for myself.

Good luck. To you and everyone else chatting about this. I have found that the nerve damage I have in my spine has created the most horrific pain out of all my issues. It's one of those things that takes ones' breath away and the only times where I have felt true hopelessness. And it persists. Even with the Lyrica when my nerve pain kicks in, life becomes a living hell. But I respect every cp doc for trying to address it, even if it might be considered unorthodox (though not illegal !) :-)

Drugs.com provides accurate and independent information on more than 24,000 prescription drugs, over-the-counter medicines and natural products. This material is provided for educational purposes only and is not intended for medical advice, diagnosis or treatment.